I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

Beth DeCristofaro is a pulmonary hypertension patient from
Virginia. She discusses her diagnosis and involvement in clinical
trial research. Beth is a married mother of two, and a former
Hospice Chaplain.

I'm Beth Decristofaro, and I have idiopathic pulmonary arterial
hypertension. I was diagnosed in October of 2017.

I actually was on vacation, had, looking back, what was a crisis
because I didn't have many symptoms before that. In hindsight, I
recognize now some of them, but I was functioning, working
full-time. I was diagnosed after going to an ER short of breath,
barely able to walk, feeling horrible, and the ER doctor said,
"We've called in the cardiologist because we have no idea what's
going on with you." That weekend, I was diagnosed. Within about
four weeks, I was on an IV and an oral med. I had originally been
put on two orals, but did not respond well, and so my PH specialist
said, "The IV is the way to go." I've been on that since and
responded very well, so they were right.

I was diagnosed really quickly, and I know that's unusual for
this disease. It came out of the blue in many ways. I had noticed
about six months before that I was having trouble walking up the
stairs, but I figured I was out of shape. So, I did not even really
understand when I was first told what it was. I think I just knew
that this was pretty serious, and so what do we do next? It was
later when I got to an excellent PH specialist cardiologist that it
began to sink in. I had been in pretty severe heart failure. Then
it began to hit me like a ton of bricks. What does this mean? Do I,
in fact, have a real life-limited type of a diagnosis now? My
family and I kind of began to look at that and say, "What do we
need to do?"

What was interesting is as I was beginning to understand and
realize the limitations, I began to also respond quickly to the
medicines. It was always a, oh my goodness, I'm living every day
with my mortality in a way I had never done before, but on the
other hand, I knew I was being helped, and so it was sort of this
astounding off balance feeling for a very, very long time. I was
put on the IV therapy in end of October, and I think it was
probably the end of March, beginning of April, that my own doctor
said, "Hey, would you be interested at all in being part of a
clinical trial?" Then it was April and May that I got involved in
it. It's been better. I've had a better response for me,
personally, than I ever expected, which is just amazing.

My background has been in healthcare for many years, so I was
always open to that idea, but didn't really realize you could do
that as an active patient. I am on a trial that is a small phase
one trial, and it's called ABI-009 for Patients with Severe
Pulmonary Arterial Hypertension. It is an interesting trial because
this drug is already FDA approved. It's an immunosuppressant that's
been used for years for transplantation patients. They're looking
at what immunosuppressant properties might also be appropriate for
PAH. They are finding certain similarities, and this also has to do
with inflammation in the arteries, so it's a very small trial.
There's no placebo. We all know we're getting this particular drug.
I think it's really sort of sped up my positive response. I'm
seeing a big difference in my own health.

My overall feeling about clinical trials is that they're
absolutely necessary. I had never bothered looking into one very
closely. When I received the information, and they give you copious
amounts of information and spend a lot of time explaining the
process and answering questions, I did really want to hear what the
risks were versus the potential outcomes. I was willing to settle
for a neutral outcome for me, quite honest, but I also didn't want
to put my own health at risk, mainly thinking of my family and my
responsibilities. In this case, I felt that the risks absolutely
were not so overwhelming. It was worth doing.

And, another big factor for me is not only is my own doctor one
of the researchers in this trial, but I live close enough that
going once a week, or even multiple times a week, because that has
happened, too, was not completely out of possibility for me. In
fact, it was a little bit of reward in that I did have to quit my
job, due to the PH, and so here I could give back a little bit in a
way that I hadn't been able to do since I was no longer working.
So, it didn't take a lot for me, but I did research it pretty
thoroughly to say, "Absolutely, let's go ahead and let's do
this."

This particular trial I'm on is 17 weeks long, which counts
pre-tests and post-tests. One of the advantages, in my opinion, is
you get to see a doctor every single week. I have had an echo done
every four weeks and lab works consistently. In order to start, I
did have to have a right heart catheterization and will have one at
the end, but that's okay for me if they're showing me what my
pressures are doing. Lots of blood sticks, but that's okay. We can
handle those. There is a stipend that I get every time I go in and
that helps defray costs, parking and what have you.

I will be finishing up now in three weeks. Again, that battery
of tests is the very final week, and then I'll be able to also get
that wrap up summary from the researcher, who is my own doctor. And
so again, I find that to be a real plus for anyone who is able and
willing to do clinical trials, is the close monitoring, not only of
what's happening positive, but absolutely if there's any side
effects or concerns, they ask you about it and monitor those. Any
time you want to back out, you can do that, too, but I have not
been tempted in the least.

If you're considering thinking about or wondering about clinical
trials, I would say start with your own doctor. What does he or she
know about it? And help you begin to think about what might be in
your best interest, but also what are promising avenues, and then
look carefully. Look carefully at the risks, but also look at the
benefits. I, personally, have had no complaints and feel like it's
a chance to do a little something for the people coming after me,
because frankly, I'm where I am doing so well because of the people
who came before me.

As you consider, of course, there is the federal website, but
also phaware global association now has a matching tool (www.phaware.global/clinicaltrials),
that you can plug in where you are and what are some specifics.
There are questions that you answer about your own PH situation.
Trials will come up in your area that you are probably eligible
for, and you can even do some research right on there. Does
anything look interesting? Anything look promising? That kind of
easy way to get in the process is something you could do today.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global